“In 2001 the subject of stem cell research first took center stage in national debate. It was an issue that formed a backdrop to the election last fall and continues to be a consequence. I know something about it as both a Parkinson’s Disease patient and the founder of a Foundation that funds biomedical research.
In 1991, at 29, newly married with a baby son, the doctors gave me an answer I wasn’t looking for. I had Parkinson’s Disease. I learned that most diagnosed with this disease were in their late fifties or sixties. Less than ten percent were young. I was in denial. It was a process that took seven years and culminated in the decision to share my experience with Parkinson’s with the public. When I finally did, I found that I not only sparked a national conversation about Parkinson’s Disease, but an outpouring of support that was and still is powerful and humbling. At one time or another I heard people say they would pray for me. It’s just an expression, I always thought, until I felt the power of that sentiment when it was sincerely acted upon by tens of thousands of people. I have no doubt but that being on the receiving end of so much spiritual energy has gone a long way to sustain me over the last couple of years. I no longer underestimate the power of prayer. I understand that for many I have become the public face for this disease and this gives you some sense why I feel a responsibility toward my fellow patients. When I engage in public debate, I do so as a patient first. There is no question my notoriety helps. But the fact remains that I have this disease. I’m not playing a role. And, like any other patient, my participation is uniquely informed by my experience.
In the past few years, I have been called upon to represent the Parkinson’s Disease community on a number of issues. I’ve come to realize that when you are presented to be an agent of change for the positive, you have to take it. This brings me to share with you my perspective on the issue of stem cell research.
Embryonic stem cells are taken from blastocysts, four to five day-old embryos, left over from in vitro fertilization and said to be discarded by fertility clinics. Hundreds of thousands of these unused cell clusters, smaller than the head of a pin, are frozen and then after a time routinely destroyed every year. In nuclear transfer, the nucleus of an unfertilized mature egg is removed and replaced with a genetically complete nucleus from an adult. These cells develop only until a pre-embryo stage at which time as the stem cell is removed. It is emphatically not the same as reproductive cloning, which uses the technology to produce a living, breathing human being.
Because embryonic stem cells are pluripotent, meaning they can give rise to almost any cell type in the body, many scientists believe they can use them to create a supply of replacement cells for injured or diseased tissue. Stem cells generated through nuclear transfer can play a vital role in exploring the causes and treatment of genetic disease. Nobel laureates have said this science promises a revolutionary breakthrough in our understanding of disease.
To be sure, we have a lot of heavy lifting to go before research translates into cures. And, it is not the only path that we should take. In Parkinson’s Disease, for example, research is also focusing on gene therapies to cells to slow progression and treat symptoms of the disease.
On many fronts, substantial progress is already being made in stem cell research. A South Korean scientist has used stem cells to repair spinal cord damage in dogs. Several researchers in the U.S. and Sweden have successfully created the dopamine neurons lost in Parkinson’s Disease and are now working to help them survive after transplantation.
Before I talk about President Bush, let me have a drink of water. I want to get this right. (He drinks and the audience laughs). President Bush will tell you that he was the first President to allow federal funding for stem cell research. This is true, if not a little disingenuous, because the field wasn’t ready for federal funding much before 2000. And while allowing the field to go forward, the current policy serves to dampen the realization of it’s potential by limiting the number of (cell) lines that can be studied with federal funding and constricting that funding. Each year the NIH funds only about 20 million dollars a year that can be loosely categorized as embryonic stem cell research, versus more than 200 million in adult stem cells. Put that in the context of the total NIH budget of approximately 28 billion a year. The 20 million is less, forgive me, than we spend on erectile dysfunction.
In the year since President Bush’s decision was first announced, only a fraction of the allowed stem cell lines have turned out to be viable. Estimates from the NIH have shown that the number of available cell lines are only 13, well short of the more than 60 that the policy promised. Recent studies show that nearly all of these cell lines are contaminated and cannot be used.
The majority of Americans want and expect scientists to move forward. If the federal government won’t take the lead, the public has shown that they will. The fact is morality can’t be boiled down to a single overriding issue, whether you are pro-life or anti-gay marriage. How well we take care of our sick and aged is no less a measure of our morality, and I could argue that it’s perhaps a higher one.”